Culture Clash – PowerchairDiaries

Robbing Banks

By Mark E. Smith

In the San Francisco Bay Area during the mid-1980s, it wasn’t hard to get harassed by the cops if you were a punk teen. Smoking in public, hanging out in front of a convenience store, being on the streets too late, having a house party, and so on would all but guarantee the appearance of cops. I witnessed many such scenes. Among my peers, there was teenage social credibility to it all. If you wanted to be the cool 11th-grader on Monday morning in homeroom, a run in with the cops on the previous Saturday night did the job.

For me, it was hard to be that cool kid Monday mornings. The cops simply didn’t hassle a kid using a wheelchair like me. I was once hanging out with a bunch of smoking, punk friends outside of an ice cream shop, and a cop threatened to haul everyone away, then turned to me and said, “Don’t worry, I don’t take people in wheelchairs to jail.”

I was instantly stung by his remarks. I wanted to be one of the guys, as teens do, but the cop clearly pointed out that I wasn’t, that I was different. In my mind, I was just as much a punk as my punk friends, right down to my black leather jacket. How dare the cop discount my punkness due to my disability. Worse yet, how dare he give me a pass in front of the punk peers I was part of – but suddenly differentiated from because of the cop’s attitude toward my disability.

My immediate emotions aside, I wondered if the cop spoke a universal truth, that people who use wheelchairs aren’t taken to jail? If it was a fact, should I skip college and take up robbing banks?

All of this – the cop’s condescending attitude and the potential of never going to jail – made me more mischievous than ever. One night, as my buddy and I prepared to cruise the avenue in his car, I got the brilliant idea to put a pillowcase over my head in the passenger seat and pretend like I was dead.

The avenue was heavily lit, so everyone saw in everyone’s car. When my buddy stopped at traffic lights, I relaxed my body, pillowcase over my head, and flopped against the dash like a dead body. It seemed like harmless fun and got lots of attention – until the cops pulled us over.

It turned out that I played such a convincing dead body with a pillowcase over my head that multiple people took our license plate number and description, and called the cops.

“What do you think you’re doing?” the cop asked, holding my passenger side door open, the scene illuminated by the cop car’s colored lights.

“Nothing,” I said, the pillowcase still on my head.

He yanked the pillowcase off of me, my grin appearing.

“This isn’t funny,” he said. “You’ve scared a lot of people.”

“It’s a joke,” I replied with no remorse.

He looked in the back seat and saw my manual wheelchair, then looked back at me.

“Let’s get your wheelchair out and get you to Juvenile Hall,” he said. “I bet your parents won’t find that funny.”

Obviously, not arresting people who used wheelchairs wasn’t a universal code among cops. I was in deep trouble, fast, and my disability wasn’t getting me out of it. So, I did what any punk teen would do: I apologized profusely and explained that I never intended to scare anyone, that it was a dumb prank gone wrong, that I’d never do it again.

Fortunately, the cop let me off of the hook – but kept my mom’s pillowcase.

At 16, I learned a lot that night. I learned that what I thought was funny scared a lot of people and that wasn’t right. I learned that there’s nothing cool about getting in trouble with the cops. And, I learned not to rob banks because they do put guys like me, who use wheelchairs, in jail.

The Danger of Dissonance

By Mark E. Smith

Cognitive dissonance. Have you ever heard of it? Probably not, as it’s pretty much confined to psychology jargon. Yet, it impacts each of us in countless ways, and in understanding how it functions in our everyday lives, it can save us hassle and heartache in avoiding those who engage in it.

In simple terms, cognitive dissonance is when our beliefs are not reflected by our actions. For example, most smokers know that smoking will eventually harm them; yet, they still smoke. You might say, cognitive dissonance is the inexplicable logic of doing something contrary to one’s beliefs: Smoking is bad for me, but I smoke.

Fortunately, not everyone engages in cognitive dissonance. People on diets skip bad food for healthier choices – and, therefore, their beliefs and actions are in harmony, not dissonance. In fact, it’s said that, as evolved humans, we naturally seek cognitive consistency, where our beliefs and actions align, and if they don’t, mechanisms like guilt, shame, and remorse come in to get us back on track. That is, doing what’s right is more instinctive than doing what’s wrong or negating our values.

Of course, cognitive consistency – where our actions reflect our beliefs – is vital to living an integrity-based life, where we honor those around us by doing what we say. However, beyond our own behavior, we need to do a much better job in surrounding ourselves with people of cognitive consistency rather than cognitive dissonance. We need to assess those around us based more on actions than words.

See, rule number one with cognitive dissonance is that there’s danger in trusting people who say one thing but do another. People who claim to love you do not hurt you (raise your hand if you’ve ever been in such a relationship or have known someone in such a relationship). Therefore, if you’re witnessing someone whose words don’t align with his or her actions, don’t let it slide – there’s danger in dealing with such a person.

Rule number two is to look for actions that reinforce words before placing too much emphasis on an individual’s character. People engaging in cognitive dissonance will promise you the world, with no ability or intention to live up to those promises. My friends who participate in online dating share the universal experience of connecting with amazing people who come across via messaging and texts as “the one,” but then disappear when it’s time for an in-person date. Why does this happen?

The answer is, it’s an online form of cognitive dissonance. Anyone can say anything online, with no actions to back it up. When we encounter someone in the real world, we intrinsically know at least something about him or her, so it’s much tougher to get fooled (or “catfished,” as they say online), as opposed to only speaking to someone through the web. If a thoracic surgeon chats you up online, but consistently finds reasons not to meet for coffee – so many emergency hospital calls! – what are the odds that the person is telling the truth, as you see no actions to substantiate the words? However, if the cute teller at your bank asks you on a date, you already know he or she is truly a bank teller, where you’re witnessing actions, so there’s at least some known authenticity.

In the corporate world, a real problem is “professional interviewees.” These are individuals who have a golden tongue toward selling themselves, but never professionally execute all of the talents they boast. The fact is, in high-performance positions, it can take six months to one year to see real results or failings – and that’s right around the time too-good-to-be-true employees jump ship to the next unsuspecting company (read that, when their cognitive dissonance is shown). To address this, astute companies look for performance-proven queues in resumes, as well as hold performance-based interviews, where claims are reasonably able to be substantiated.

There’s likewise a lot to be said surrounding cognitive dissonance and the words I love you in our culture. People are quick to say those words – easy utterances of sound – but are not so consistent in putting actions behind them. We can say those words to our spouses and children all day long, but if we’re not actively engaged in their lives in loving ways, do those words truly have meaning? I say I love you to my wife and daughters a lot, but it’s my demonstrations of love toward them that creates meaning to the words. Saying I love you doesn’t create love; engaging in loving does.

The examples could continue, and I’m sure you have your own that you’ve experienced and learned from. Yet, here’s what it all comes down to: Actions are an absolute, while words can waiver.

To truly know someone, let us not merely listen to words, but authenticate one’s character via observing one’s actions. We all find ourselves in vulnerable spots, where words can say exactly what we want to hear. However, if the words aren’t substantiated with actions – especially when the dissonance causes us harm of any kind – it’s time to break ties with such people in our lives. We deserve the reciprocation of accountable actions, not hollow words.

At the same time, we owe it to all around us to be as harmonious as possible with our own behavior, where we honor others with actions that live up to our words. So often our own behavior sets the tone of others’, and we must be authentic if we wish others to be authentic. It’s easy to point at someone and say, He’s exhibiting cognitive dissonance! Yet, let us also honestly look inward to ensure that we have cognitive consistency in our own behavior, as that’s ultimately where it all begins.

It’s cliché and true: Actions speak louder than words. As Stephen Covey puts it, “What you do has far greater impact than what you say.”

Buckley, the Serve-ish Dog

By Mark E. Smith

In Tajikistan, a man gets a goat as a dowry. Me, I got Buckley, the Serve-ish Dog.

The way this all started was that years ago, Buckley was to be a serve-ish dog to my now step daughter. However, as it turned out, while she loves cartoon dogs, she’s not keen on real ones. BINGO is a hit; Buckley, not so much. So, Buckley got to live a life of leisure, sleeping, sunbathing, reading tabloid magazines. He was like a Kardashian – he might have had talent, but why bother getting off of your butt when there are pizza scraps to eat.

So, it occurred to my fiancee and me that when she moved from California to Pennsylvania, I had a disability (actually, we already knew that part) and with Buckley being so well trained as a serve-ish dog, it was a marriage made in Heaven – although, technically, I had to marry Holly, not Buckley. Therefore, we bought Buckley a First Class ticket, minus champagne, and flew him out. We’ve been inseparable ever since.

It was really perfect timing. Rosie the English Bulldog passed away months ago, and I was ready for a new dog, missing that companionship. Interestingly, Rosie the English Bulldog was a serve-ish dog, too, only she had it backward – we had to serve her. I don’t want to sound racist, but English bulldogs are like that.

I’ve spent a month now working with Buckley and he’s doing great. It turns out, he has a brilliant Pavlovian mind – that is, he’ll do anything for a bacon treat. If I have a bacon treat on my lap and I say, “Buckley, tie my shoes,” he’ll do it, which is impressive considering that he lacks opposable thumbs.

He has an official service dog vest, and when he wears it, he’s like a cop in uniform, puffing up his posture like he’s of importance. However, I have yet to see him racially profile anyone. Rather, in public, he sticks by my side, follows every command and is a legitimate, behaved service dog. I’ve learned, though, that he’s far smarter than the general public. He’ll lie motionless beside my power chair in a bustling restaurant, wearing his neon-green vest that says SERVICE DOG in giant reflective letters, and giddy people come up and ask, “Oh my goodness, is he a service dog?” I have to stop myself from replying, “No, he’s a Shetland pony in a Halloween costume – want a ride?”

I’ve also learned that there’s no official registration or standard for service dogs, and legally they can go anywhere you go. If questioned, all you have to say is, “He’s my service dog,” and you’re sitting side-by-side on a roller coaster at Disney World (Buckley was such a good sport, wind blowing in his face!). As such, you encounter individuals ranging from those with lifelong visual impairments to wheelchair users to super models with anxiety all using service dogs. And, there’s a huge range of training for service dogs, from two-year schools, to no training at all (hence, super models with anxiety). Buckley lands in-between. If there’s an educational hierarchy for service dogs, his degree is from the University of Phoenix. He’s trained, but not a West Point graduate.

Interestingly, my peers with service dogs are the worst snobs. They’ll come right out and ask me, “Is he a real service dog?”

I now reply, “Buckley, tie my shoes. …Does your mutt do that?”

Guts and Glory

By Mark E. Smith

There’s guts and there’s glory, and they don’t always go together. And, I like it that way – the authenticity of guts is where real character resides. Guts for the sake of glory is a facade, just as easy to put up as it is to take down.

When I met MMA champs Daniel Cormier and Alexander Gustafsson in the green room at Fox News I, frankly, wasn’t impressed. I mean, they were nice guys – and could literally kill me with their martial arts skills in an instant – but they looked like normal-build, relaxed dudes. Once they’re in a cage, I guess they strive to beat each other to death, but in everyday life, they struck me as average guys. We chatted a bit and they seemed pals – that is, until they got on the air to promote their upcoming fight and feigned being enemies.

Earlier that morning, I got up at 4 a.m., and slid nude from the tall hotel room bed to the floor – more of a fall, really. From there, I crawled to the roll-in shower, tensing every muscle in my body to keep my balance. That’s one of the odd aspects of my cerebral palsy – even on the floor, I can still fall, and I do.

Once in the shower, I couldn’t reach the valve, but there was a grab bar just below it, so with my right arm, I did a complete one-arm pull-up, struggling with my left hand to turn on the valve, my knees banging against the tile wall. Without coordination or the ability to accurately adjust the temperature or move clear of the shower head, it was a crap shoot whether ice cold or scalding hot water would rain down on me. But, I didn’t care. I just needed a shower, and was willing to do what it took, painless or painful. And, with the shower just being the start in my process of getting ready for the day, it would be another three hours of vying until I was in my power chair. Nothing comes easy, and some of it is downright harrowing. The only thing on my side in these times is tenacity and a bit of fearlessness. Guts, I would say.

Now, my disability experience is no different than that of many others. We quietly overcome extreme daily obstacles, often enduring pain and taking huge risks – braking a bone or busting your head open isn’t hard to do in a situation as mundane as using the commode. And, to me, that’s where guts come in. You know the risk, but move beyond it because you have no choice if you wish to be independent.

See, while I respected the dedication of the MMA fighters, they didn’t command my admiration like my peers with disabilities. The MMA fighters are in it namely for the glory, they can turn guts on and turn guts off. You can’t do that with the daily challenges of disability – you’re all in, and there’s no tapping out.

Soon, we were all on set, Daniel and Alexander being interviewed about their upcoming fight. And, as I waited off camera, my segment coming up next, I listened to them talk about how tough they are. Admittedly, the ego in me – the MMA fighter within me with guts but no glory – was hoping the anchor would ask them, “OK, I get that the fight is coming up, but tell us about your challenges in the shower this morning….”

Wheelchairs in Heaven

By Mark E. Smith

Every so often, a well-meaning soul of tremendous faith says to me, “You need not worry, there are no wheelchairs in Heaven.”

And, while I appreciate the deep, faith-based perspective of such individuals, I have to bite my tongue to keep from exclaiming, “What do you mean there are no wheelchairs in Heaven! How am I going to get around?”

I’m no theologian, but I understand the Judeo-Christian belief that there is no suffering in Heaven, and this is what individuals are truly getting at when they make such comments. And, I share the belief that there is no suffering in Heaven.

However, their words on this earth imply that I am suffering, that in Heaven, God will make the injustice of my life right. Yet, my faith says that they have it all misunderstood.

See, God made me right. Is my life in living with cerebral palsy a bit physically different than others? Of course. But, no one can justly declare it as suffering or needing to be resolved. Such beliefs are rooted in the unintentional ignorance of individuals, not in the intentionality of God. If we are to believe in an intentional God, then we must likewise believe that each of our lives was blessed with beautiful intention. My faith says that my cerebral palsy is part of exactly who I’m supposed to be, today, tomorrow, eternally – and I’m blessed with that. None of us need miracles, as we are already each a miracle.

In this way, if we are to have true faith, we must believe that each of our lives and circumstances has been created with an intention and purpose that some may not have the earthly insights to recognize. But, that’s OK. As long as we know our own value, intentionality and purpose, we know we’re blessed with being exactly who we are, perfect as-is – on earth as it is in Heaven. Just as houses of worship have accessible parking, wheelchair ramps and elevators, I’m positive that there’s an awesome custom-fit wheelchair awaiting me in Heaven.

Living Like Hemingway

By Mark E. Smith

Sure, they were both great posthumously. However, during their lives, Hemingway far outlived Fitzgerald – not just in age, but in truly living.

I mean, history shows their enormous accomplishments, both helping define 20th century literature, The Great Gatsby and The Sun Also Rises leading the way, respectively. But, Ernest Hemingway, he was relentless in living life on his own terms, while F. Scott Fitzgerald was about simply doing what he had to, concerned to a fault with what others defined as success. But, I’m telling you, by following the path that others defined as success, Fitzgerald was the far less successful of the two, not just in literary accomplishment, but, again, in life.

And, Hemingway told him so, constantly. Hemingway saw that Zelda, Fitzgerald’s southern socialite wife – who broke off their engagement once because Fitzgerald wasn’t earning enough money – was destroying Fitzgerald’s spirit, killing his writing with her own agenda and issues. Yes, Hemingway was married to Hadley Richardson at the time, but she was his equal and inspiration. For Hemingway, as much as he forever loved Hadley (although the divorced in 1927, and he had three subsequent wives) he’d never let anyone or anything interfere with his greatness as a writer. This isn’t to say that I’d live to that extreme. Of course I wouldn’t – my daughter, my significant other, my family as a whole, has to come before all. But, I wouldn’t tolerate a Zelda, either. Hemingway was right: if a spouse can’t let me be me, and support my passions as I support hers, there’s no room in a writer’s life, or anyone’s life, for that. That’s the equality that Hemingway had with Hadley, a striking contrast to the never-ending requirements for money and commercial success that Zelda demanded of Fitzgerald – and he ultimately required of himself.

So, here’s how it went down. Hemingway and Fitzgerald met in 1924, when Fitzgerald already had two novels published and countless literary magazine pieces, highly in demand as a writer. They were only three years apart in age, and while Fitzgerald focused his early 20s on trying to achieve critical acclaim, fame and money, Hemingway joined the World War I effort as an ambulance driver in Italy, where he was severely wounded, going on to serve as a war correspondent for the Toronto Star. Hemingway and Hadley ended up living in Paris because it was cheap and there was a bustling literary scene.

Now, I’m skipping a bunch here, but in 1924, Hemingway, pretty much unknown, meets Fitzgerald, a forever financially broke but known writer. And, Hemingway keys in on Fitzgerald as talented but disingenuous, but Fitzgerald takes to Hemingway, serving as a mentor into the literary scene.

In 1925, Fitzgerald publishes The Great Gatsby, hell-bent on fame and fortune. To the contrary, the book fails, earning Fitzgerald a mere $2,000 in entirety (it wasn’t till 20 years or so after his death that the book finally found its fame). Yet, Hemingway liked the novel – but despised Fitzgerald’s void of integrity as an author. Hemingway referred to Fitzgerald as a literary whore, where his quest for wealth and social status corrupted his writing. Fitzgerald all but noted this, explaining that all his pieces were written with authenticity, then altered toward commercial success. Yet, beyond writing for magazines, Fitzgerald ultimately had no fame or fortune as the 1930s came.

Yet, Hemingway, originally the literary lesser of the two, was solely about authenticity in writing. He only wanted to write what he wanted to write. Having seen merit in The Great Gatsby, but also a lack of integrity in its writing, Hemingway wanted to write a novel – his way. In 1926, Hemingway’s The Sun Also Rises was published – with input by of all people, Fitzgerald – but dramatically different than Fitzgerald’s work. The Sun Also Rises was a metaphor for hope during the post-war era, and was written in a Roman-a-clef style, based on real events and people. The book sold out of its first printing, then a second, garnering much attention, skyrocketing Hemingway’s career.

Between 1929 and 1940 (the year of Fitzgerald’s death), Hemingway’s career soared, publishing A Farewell to Arms, To Have And To Have Not, and To Whom the Bell Tolls. He traveled, observed, lived and just wrote it all. There was nothing humble about “Papa,” as Hemingway became known; however, there was great humility in his writing – it’s just humanity stripped. I mean, have you read Hills Like White Elephants? You’re there, at the train station in the Ebro River Valley of Spain, over hearing the kind of interpersonal conversation people have. No superfluous dialogue, no pretense – just real.

And, Hemingway stuck with this his entire life. He truly wouldn’t compromise, and once when he felt like a publisher wasn’t respecting his work, he sent them a purposely terrible manuscript, knowing that their rejection would terminate a lucrative contract. He needed the writing (and Hadley swore it was truly what kept Hemingway from committing suicide for over 40 years), not the money or fame Fitzgerald sought. Hemingway biographer, Pauline McLain wrote, “Perhaps his [Hemingway’s] true love could only ever be his work, which mattered more than living.”

And, that was Fitzgerald’s downfall. He was so caught up in image, success and money that he failed at all of it. Near his death in 1940, Fitzgerald was a then-forgotten author, living in Hollywood, writing terrible movie scripts (ironically, though, making $29,000 one year, the most he ever made). He’d lost the respect of his Paris peers of the ’20s, known as a washed-up hack Hollywood writer, where he even told his daughter that his life was a failure. Dead at age 44, the young writer with so much talent but drawn to not his own greatness, but the lure of material success, lost everything in the end – most painfully, his dignity, as Hemingway predicted as he tried to convince Fitzgerald in the late ’20s to quit whoring his work, drop Zelda and make it all about the writing.

Of course, we know that Hemingway carried on, with The Old Man and the Sea in 1952 winning the Pulitzer, and contributing to his winning the Nobel Prize for Literature.

So, why do I tell you all of this? Well, Hemingway and Fitzgerald prove a terrific cautionary tale for all of our lives. If we don’t wish to merely live, but to truly thrive, we can’t chase after the external forms of success – we will never catch it, but it will catch up with us. However, if we follow our passions with unyielding authenticity, the world will follow us, true success will come our way. Live true to yourself and your inherent greatness, and the world will prove true to you, where the only authentic voice is your own.

Stereotypes – Spoken Word Video

By Mark E. Smith

Unfortunately, we’ve all experienced stereotypes, no matter if they were placed on us, we’ve witnessed them used toward others, or, worst of all, we’ve engaged in them. In this spoken word piece, I explore the true meaning, purpose, impact, and consequence of stereotypes.

Alien on a Leash

By Mark E. Smith

The dog sits on the stainless-steel examination table.

“Maybe we should muzzle her, so no one gets bit,” the veterinary assistant says.

“She’s deaf, it won’t help,” the vet says.

And, I’m astounded that veterinary medical professionals are acting as if my 22 lb., 4-year-old French Bulldog is a viscous alien – just because she’s deaf.

“She’s totally normal,” my sister chimes in.”You can examine her like a normal dog.”

“I don’t know?” the veterinary assistant says to the vet. “Maybe I can hold her for the exam?”

And, Lola, my little white fluff-ball with a black ring around her eye like the dog from Our Gang, just sits there, looking at the vet staff like they’re all insane. And, she’s right – these medical professionals are acting like idiots, as if they’ve never seen a dog before, as if a deaf dog completely throws out every rule of veterinary medicine, as if my sister and I entered the clinic with an unknown creature on a purple dog leash. It’s a freakin’ dog who hasn’t been eating normally and has been vomiting – this isn’t a paleontological mystery!, I want to scream.

“Just examine her – she’s a normal dog,” I say.

Of course, Lola is a normal dog physically, but being deaf-from-birth, she has developed extraordinary skills. As cliché as it sounds, she runs circles around my English Bulldog when it comes to using her senses (which might not be that impressive since all my English Bulldog wants to do is sleep on the couch or bark at the clothes drier). Lola is astoundingly visual, reading facial expressions, if not lips. We speak commands to her, and as long as she’s looking at us, she responds. And, she has an uncanny sense for vibrations. She knows before the rest of us that a car has pulled in the driveway, and when she’s sleeping on the floor and my wheelchair or footsteps pass by, she awakes. In fact, if you didn’t know Lola was deaf, you’d never have a clue – she’s just an alert, happy, hyper little dog buzzing around the house.

But, the vet knows that Lola is deaf, and it clearly freaks out her and her staff. Lola looks and acts like any other dog at the vet clinic, but the fact that it lists her as deaf on her medical chart changes everything, making her “disability” more perception than reality.

Finally, the vet examines her and notes, “It’s tough to tell what’s really going on because she’s deaf.”

If she wasn’t deaf, would you ask her a litany of questions, expecting a verbal response from her? I wanted to say but refrained. Really, because a dog is deaf, it’s tough to tell why it’s vomiting? What kind of asinine correlation is that? Clearly, a Critical Thinking course isn’t part of the curriculum for veterinary medicine.

With my sister and I advocating for Lola, she’s finally X-rayed, gladly finding no internal blockages – no rubber balls or cotton socks in her digestive tract – and she’s ultimately diagnosed as having a stomach virus, prescribed a diet of boiled hamburger and rice. In short, the dog’s vomiting got it prescribed a personal chef – ingenious!

And, as I pay the $258.14 bill at the check-out counter, with Lola standing beside me, her panting, pug-nosed face pointing toward the door, wanting to go home, I’m again reminded of how shockingly ignorant the medical field can be toward those of us with disabilities – dogs or humans, no matter.

The Best Kinds of Crazy

By Mark E. Smith

One of my college buddies was the private pilot on comedian, Howie Mandel’s, national comedy tours in the early 1990s. My buddy’s observation was that Mandel was genuinely crazy, that he never saw Mandel waiver from his on-stage persona, that on the jet, Mandel would simply waffle between being hysterically funny and clinically irrational. In fact, Mandel billed himself as “a wild and crazy borderline psychotic.”

Of course, we now know that Mandel publicly discusses one of his diagnosed mental illnesses, mysophobia, an irrational fear of germs. Yet, based on my buddy’s stories and Mandel’s over-the-top persona, it’s reasonable to wonder if Mandel has other conditions, as well?

Interestingly, the psychology community has been studying a link between mental illness and very successful people for two decades, and their findings are fascinating. “Hypomania” is a persistent mood that causes an exaggeration of thoughts that’s most often linked to bipolar disorder, where one can be energized, euphoric, overflowing with ideas, extra social, and a risk-taker. These traits may not only be seen in those suffering profound mental illness, but are also seen in extraordinarily successful people. After all, from show business to entrepreneurial business, being energized, euphoric, overflowing with ideas, extra social, and a risk-taker are all traits that allow one to succeed where others would fail. Therefore, there is a debate in the psychology community that certain kinds of diagnosed mental illness may not be “crazy” at all, but actually an evolutionary advantage.

I’ve witnessed this similar phenomena in physical disability terms, where physical disability isn’t debilitating for some, but actually elevating, where their lives aren’t restricted by it, but empowered.

What’s extraordinary about physical disability is that if we’re to succeed, it requires us to more intently focus on abilities, where our lives aren’t about what we can’t do, but what we can do. The average person without disability goes through life with a fairly fixed outlook toward what’s possible, rarely questioning it, rarely recognizing the chances that present choices.

However, when it comes to physical disability, we’re forced to question at points in our lives, Can I do that? – and, what’s remarkable is that the question most often leads to, How do I do it? which leads to accomplishing what was once thought impossible. So, this progression of constantly questioning what’s possible leads to never-ending expansions of our lives, where the possibilities eventually become endless, where we forget about the initial question of, Can I do it?, and begin only asking, How do I do it? And, it’s at that point that we see nothing but potentials. Put simply, while other people stop at what’s practical or seemingly rational, we intrinsically push ours live much further, toward what’s truly achievable on a scale that others don’t fully grasp. In ways, we may seem crazy.

And, because we can live on such a larger scale, where …well …anything seems possible, it can perplex those without disabilities who live strikingly limited lives. When someone questions how you do something, or sees your goals as unrealistic, it’s not reflective of you as one with a disability – again, you think and live on a larger scale than most! – but it merely reflects the closed mindsets of those who haven’t had the opportunity to become so visionary.

Indeed, physical disability intrinsically opens us to possibilities, proving not a limiting factor in our lives, but truly an unlimited factor, where what some inaccurately define as debilitating is ultimately liberating. And, surely there’s enormous value, reward, and blessing to living in a counter-intuitive realm, where crazy can prove a higher level of sanity, and physical disability can prove a higher level of ability.

The Common Sense Cure

By Mark E. Smith

More than once, I’ve published an essay on how I’m not a man with a disability waiting for a cure, that I’m grateful for the life that I’ve been given, and I wouldn’t ask for a different life path. I was born with cerebral palsy, I live with cerebral palsy, and I’ll die with cerebral palsy – and I’m grateful for the life encompassed within, as-is. I’ve also written about how I don’t believe that it’s healthy for anyone to put his or her life on hold awaiting a cure – life is what we have in front of us at any given moment, so let us make the most of it.

Nevertheless, despite my own self-acceptance and encouraging all to live life to the fullest as-is, I’ve increasingly supported cure-based causes, not toward any specific condition, but toward the betterment of the human condition overall, where if we can treat and prevent a range of disabilities moving forward, we’re evolving humanity – and changing individual lives – in very meaningful ways. Spinal cord injury research toward a cure is a great example of one cause among many that I support, where I recently spoke at the national Unite 2 Fight Paralysis Science and Advocacy Symposium in Phoenix.

Now, you may be wondering, why I, as one with cerebral palsy, who’s not looking to cure myself, spoke at a cure-based conference geared toward paralysis? My appearance actually made perfect sense to me and the 150 people in the audience. See, the foremost area of research toward treating and curing spinal cord injuries is stem cells – and stem cell research potentially effects every person on the globe, likely treating and curing more than 80 illnesses, diseases, and disabilities. And, what’s amazing is that we’re already seeing results, where children’s own umbilical cord blood stem cells have been used in recent years to treat their illnesses and disabilities – including cerebral palsy. In fact, my sister, a cancer survivor, had her daughter’s “cord blood” banked, so that in the event that my sister has a recurrence of cancer, she has cord blood stem cells to dramatically aid in her treatment (and the same cord blood can likewise serve her daughter or husband toward illness and disability, if ever needed). Therefore, my talk wasn’t about curing any one condition, but about uniting our voices in support of research toward enhancing the human condition through research-driven cures as a whole.

Interestingly, my position of seeing tremendous humanitarian value in curing as many conditions as possible places me at philosophical odds with a radical fringe of the disability community – that is, a select few who believe that cure-based efforts do nothing but harm those living with disability by suggesting that we’re damaged goods, needing to be fixed, that we need to forget about cures and emphasize disability as a “natural part of human diversity.” However, here’s the problem with such fringe thinking: It contradicts science at best, and is inhumane at worst.

If we look at the origins of “disability” in an evolutionary context, it’s classified as three primary causations: A genetic or developmental anomaly; an injury; or, a disease or illness. To presume all of those as a “natural part of human diversity,” is scientifically invalid. We know that, barring modern medical intervention, genetic or developmental “variants” that are detrimental to survival weed themselves out, so they become extinct. We know that “injuries” are an anomaly that are totally avoidable beyond the given circumstance that caused injury – as in, there’s nothing “natural” about getting paralyzed in a car accident. And, we know that many diseases are preventable based on human behavior, diet, and environment. In these ways, it becomes impossible to argue that “disability,” as a scientific absolute, is a “natural part of human diversity.” Scientifically speaking, forms of cerebral palsy, paralysis, and HIV simply don’t occur unavoidably by nature in each of us – they result from extraneous factors – and many genetic variations would become extinct if modern medicine wasn’t able to preserve so many lives at birth. In this way, stating that we should “simply accept disability as a part of nature” truly goes against what we know from science, that very few disabilities are literally a “natural part of human diversity,” but occur via other causations – ones that are increasingly preventable and treatable. Using paralysis as a perfect example, we’ve used research in the automotive field – occupant restraints, headrests, and so on – to reduce injuries, and it only makes sense to use research in areas like stem cell therapy to treat any injuries. A cure for paralysis, therefore, isn’t altering a “natural part of human diversity”; rather, it’s using science to resolve an injury, restoring one’s full abilities.

Secondly, the belief that the quest for cures somehow detracts from those of us living with disabilities is a specious argument. Do some able-bodied individuals think that we live lesser lives without a cure? Of course they believe such. Do some individuals with disabilities feel that they, themselves, live lesser lives without a cure? Of course they believe such. However, they’re not emblematic of most of us, where we’re intellectually balanced enough to see both exceptional quality of life in living with disability while simultaneously supporting the quest for cures. Yet, the disability radicals will tell us that we can’t have acceptance and dignity while also supporting cure-based efforts. And, the radicals’ bitter, illogical perspective couldn’t be more distorted or inhumane.

I think back to my daughter’s birth, where due to my wife’s genetic condition, my daughter had a 50-percent chance of being born with a severe disability, where brain surgery would be needed to stop the progression of the condition for her to live. I had cerebral palsy, and my wife had genetic generalized dystonia, so we both knew how well we were living with disability, that we didn’t doubt our daughter could do just as well despite the projected health issues. We knew the risks and we were willing to love and raise our daughter, disability or not. However, as parents, of course we hoped that our daughter didn’t have the genetic condition. After all, given the choice, what rational parent wants his or her child living with disability? Although our daughter was born without the genetic condition, we were prepared to love her either way, but we were likewise relieved that she was born without disability. The question is, then, because I was relieved that my daughter wasn’t born with a disability, was I diminishing my own self-worth as one with a disability, did my mindset suggest that I didn’t want my daughter to be a lesser person like me, as the fringe’s thinking suggests?

Of course not. I was simply a father wanting the absolute best for my daughter – it’s how fatherly love works. Again, no rational parent would choose disability for his or her child, just as no rational person would wish unbridled disability as a fixture of human existence when we have potentials for prevention and cures.

From this perspective, we have to wonder why, by default, do those opposed to cure-based efforts seemingly want others to endure unbridled illness, disease, and disability, and suggest that if you support the quest for cures, you’re truly devaluing disability experience? Why do they stick to their position of, Disability is natural, and by seeking cures, we’re not accepting disability as valid way to live – we need acceptance of disability, not cures?

What they’re missing is a balance in their disability experience. They’re so wrapped up in themselves that they have no ability to consider the lives of others. Again, I can be totally accepting of my own disability while wanting absolute function and health for everyone else – it’s called having empathy and compassion. In very simple terms, I can’t walk, and I’m fine with that; but, I want everyone else to walk because it makes their lives easier on a fundamental level. What the radicals don’t understand is that you can have a disability and compassion toward others at once, where you can be completely comfortable in your skin, but still not wish hardships on others. And, most importantly, you can be totally accepting of disability while simultaneously striving to help others avoid its challenges through cure-based efforts.

See, I support the quest for cures not because of the promise that they show toward me, but because of the promise that they show toward all of humanity.